Implementing partnership working to enhance the care of the acutely unwell child in children’s community palliative care services
Intended for healthcare professionals
Evidence and practice    

Implementing partnership working to enhance the care of the acutely unwell child in children’s community palliative care services

Gemma Elizabeth Williams Senior lecturer for children’s nursing, Staffordshire University, England, formerly clinical practice educator, Acorns Children’s Hospice, Birmingham, England

Why you should read this article:
  • To recognise that children with complex care needs are at increased risk of developing serious illness which could lead to sepsis

  • To be aware of a bespoke virtual learning education programme on the care of the acutely unwell child for community palliative healthcare professionals

  • To identify the need for hospices and community palliative care services to share resources and ensure evidence-based practice for acutely unwell children

Children with complex care needs are at an increased risk of developing serious illness which could lead to sepsis. Many children receiving palliative care do not have a completed advance care plan identifying their wishes for ongoing care, which means they would require active intervention if they were to become acutely unwell. Sepsis is the immune system’s overreaction to an infection or injury and about 25,000 children are admitted to hospital with sepsis in the UK each year. Early recognition of the acutely unwell child and escalation of concerns from the community to an acute care setting is required to manage and treat a child who is deteriorating. This article describes a project of three phases which aimed to explore the assessment tools available to support recognition and screening of children who became acutely unwell while accessing community palliative care services. It also identifies the importance of working together in partnership with external organisations and acknowledges the achievements of all of the partners involved.

Nursing Children and Young People. doi: 10.7748/ncyp.2023.e1440

Peer review

This article has been subject to open peer review and checked for plagiarism using automated software

Correspondence

Gemma.Williams@staffs.ac.uk

Conflict of interest

None declared

Williams GE (2023) Implementing partnership working to enhance the care of the acutely unwell child in children’s community palliative care services. Nursing Children and Young People. doi: 10.7748/ncyp.2023.e1440

Acknowledgements

The author wishes to say a special thank you to all of the external partners who supported this project for their time and expertise. It is important to celebrate the achievements that partnership working and collaboration bring, not only to the professionals involved but also to the children and their families who we care and advocate for. The UK Sepsis Trust, specifically Ron Daniels, chief executive, and Oliver Jones, lead support nurse, were essential to the development of the tools discussed in this article by offering advice about layout and design and sharing their enhanced knowledge about sepsis in children. Their invaluable support and partnership working enabled this achievement. Karl Emms, lead nurse for patient safety, Birmingham Women’s and Children’s NHS Foundation Trust, supported partnership working by offering advice about tool layout, the practicalities of observation tool use and teaching requirements to ensure best practice was followed. Nick Gee, associate professor (accessibility and inclusivity), Faculty of Health, Education and Life Sciences at Birmingham City University, reviewed the education programme and provided feedback from a higher education perspective. He stated that the programme was ‘emotionally intelligent, and interactive throughout’ and he continues to offer support if required

Published online: 20 February 2023

CHILDREN’S HOSPICES aim to provide a clinical but ‘homely’ environment with a specialist nursing palliative care team. For example, children will have their own bedroom and possessions during their stay, and access to shared living rooms, dining room and gardens as well as relaxed visiting opportunities from family and friends.

Many children accessing a hospice also have complex care needs and high-risk factors for developing serious illness. Sometimes it is important to ‘normalise’ a complex care need to ensure that the focus of care is on the individual child’s holistic needs rather than just their underlying condition. For example, it is unlikely that a child requiring advanced clinical care such as long-term ventilation via an artificial airway would be able to go swimming at a local leisure centre; however, nurses in a hospice will have the skills and resources to support the child to swim safely alongside a specialist physiotherapist. The focus here is on the holistic benefits of the activity rather than on the individual’s underlying condition. However, in some cases a child’s ‘normal’ can also make an assessment of their condition more challenging. For example, if a child with severe epilepsy was unable to explain how they felt verbally, this might make an assessment of their illness or injury more challenging. In these circumstances it is very important that nurses have specialist communication and assessment skills and have had time to get to know the individual child well.

As a result of children with increasingly complex conditions being referred to hospices from the community or acute settings, acute deterioration is becoming more commonly observed in practice by nurses in children’s hospices and other community palliative care teams. Therefore, it is increasingly important for palliative care services to deliver education to support nursing teams to recognise and care for the acutely unwell child.

Over the past two years it was necessary to enhance practice education in the children’s hospice where the author worked to support the care of acutely unwell children if they were to deteriorate. With the support and engagement of partnership working relationships between the author and professionals from the voluntary sector, NHS acute care services and higher education, a range of assessment tools was produced together with a policy, procedures and an education programme to support hospices and community palliative care teams to care for the acutely unwell child. Consent has been given by all individuals involved in collaborating with this project for their involvement to be shared in this article.

It is also important to mention that the assessment tools and education programme for the care of the acutely unwell child discussed in this article are not appropriate for children admitted for end of life care. Reference should be made to chapter two of the West Midlands Children and Young People’s Palliative Care Toolkit (Together for Short Lives 2018) for further information on children requiring end of life care support.

The words ‘child’, ‘children’ and ‘young people’ in this article refer to the age range from birth to 18 years.

Background

Acorns Children’s Hospice is a large charity covering the West Midlands and Gloucestershire in England. Between April 2019 and March 2020, internal data showed that 821 children and their families were offered palliative care services by the charity’s three hospices. During this time there were one or two emergency admissions to hospital per month from the three hospices because the child’s health condition had deteriorated.

Sepsis is the immune system’s overreaction to an infection or injury and results in about 25,000 hospital admissions of children in the UK each year (UK Sepsis Trust 2022). Children with complex care needs in general are at higher risk of developing sepsis in response to an illness or injury.

In 2020 evidence from internal data showed that only just over half (52%) of the children and young people accessing Acorns’ hospice services for planned short breaks had a completed advance care plan that supported either full treatment, modified treatment or ‘do not attempt resuscitation’ wishes. A decision not to attempt cardiopulmonary resuscitation (CPR) only applies to CPR and, as Fitzsimons et al (2017) stated, all other care and treatments appropriate for the individual child or young person should continue. This evidence identified that a significant number of children would require active intervention if they were to become unwell while accessing hospice services.

Education programme

The author identified the need for an education programme to update the knowledge of hospice care teams on the recognition of the unwell child, and how to care for acutely unwell children while escalating concerns to acute care services. Initially, to avoid replication and duplication of education courses and escalation tool development, it was important to explore the resources available locally and nationally. Communication with other local hospice providers and partners revealed that training methods for teaching staff how to recognise the unwell child were very different. Some offered simulation training, some offered face-to-face sessions delivered by external organisations, others used online courses and some had no formal training in place.

The author also explored which early warning tools were used in the community setting, and the findings were similar. Many children’s hospices and community palliative care teams had adapted and customised children’s early warning score documents available from the acute care setting to inform an escalation pathway process. Some community services had amended the primary care or paediatric screening tools published by the UK Sepsis Trust (2019), and again others had nothing in place.

Children requiring complex care generally deviate from standard age-specific vital sign parameters (Fitzsimons et al 2017). To provide safe care, it is essential that those working with such children are familiar with their unique needs. To facilitate this, hospice teams complete extensive care plans. These include holistic needs assessments and reflect routine care and specific clinical care needs including the child’s normal behaviours, communication methods and pain relief. These care plans also include escalation plans to support hospice nurses in identifying deterioration and how and where to escalate any concerns. This is achieved by working in partnership with children, their families, their community teams and multidisciplinary medical teams in tertiary centres.

Acorns previously used online training to support nurses’ education needs in terms of how to identify the ‘sick child’ (Royal College of Paediatrics and Child Health (RCPCH) 2020). This training was evidence-based, reviewed and up to date and supported by the Department of Health and Social Care and RCPCH, among others. However, online learning can be isolating at times for those taking part because there is less opportunity to seek clarification and develop understanding by asking questions.

A digital survey was provided for care staff at Acorns that aimed to explore what was needed to best support their education in terms of identifying sick children. The findings suggested that there was a need for an education programme aimed at recognising acutely unwell children, escalating concerns and caring for them while they awaited transfer to hospital. Any education programme needed to be tailored to community palliative care with a face-to-face element to enable hospice staff to ask questions, as well as linking theory to practice.

The Care Quality Commission (2020) and Skills for Health (2022) acknowledged the importance of integrating learning from clinical education and skills teaching. To deliver such a blended learning approach, a bespoke programme was specifically designed by the author for the hospice’s nurses, physiotherapists, and non-registered team members such as healthcare assistants and clinical support workers. Due to the coronavirus disease 2020 (COVID-19) this education programme could not be delivered face to face; however, it was designed to promote a facilitated, near-physical experience through the use of a virtual learning classroom.

The virtual learning classroom enabled the launch of the early warning and sepsis screening tools described in this article; offered learners an opportunity to demonstrate and practise Airway, Breathing, Circulation, Disability, Exposure (ABCDE) assessments; identify signs of sepsis using the screening tools; and show that they knew how to escalate concerns appropriately during scenario group work.

Key points

  • Sepsis, the immune system’s overreaction to an infection or injury, results in about 25,000 hospital admissions of children in the UK each year

  • Children’s palliative care sepsis screening tools were developed to support clinical judgement and to empower healthcare professionals in the hospice and community setting to act on their concerns

  • Many hospices and community palliative care services have small and sometimes isolated education teams

  • There is a need for sharing of resources among organisations to ensure evidence-based practice is available to support children when they are acutely unwell

Method

Phase 1 – development of paediatric palliative care sepsis screening tools

The first phase of the project was to identify those in professional clinical practice who were motivated to make a positive change and improve services. This was achieved by engaging with external partners locally and nationally in the development of the early warning and sepsis screening tools, education programme and delivery. For example, when attending the UK Sepsis Trust’s ‘train the trainer’ course, the author engaged with the course facilitator, a relationship that enabled the author to identify the deficit in children’s palliative care sepsis screening tools in the hospice. Through collaboration with the UK Sepsis Trust, three children’s palliative care sepsis screening tools were developed for the following age ranges: under five years, 5-11 years, and 12+ years. These screening tools are available to download free from: www.acorns.org.uk/our-care/professionals/care-education

Figure 1 shows the sepsis screening tool for children aged under five years.

Figure 1.

Sepsis Screening Tool for paediatric palliative care in children aged under five years

ncyp.2023.e1440_0001.jpg

The children’s palliative care sepsis screening tools reflected the sepsis guidance developed by the National Institute for Health and Care Excellence (NICE) (2016, 2019a, 2019b) and incorporated the UK Sepsis Trust (2019) tools by identifying amber and red flag symptoms of sepsis. The children’s palliative care sepsis screening tools were developed to support clinical judgement and to empower healthcare professionals in the hospice and community setting to act on their concerns (UK Sepsis Trust 2019). The tools were trialled between November 2020 and March 2021 internally and with local external hospice partners who acted as peer reviewers. Since March 2021 the tools have been used in practice.

NICE (2016) recommends that if sepsis is suspected a structured set of observations should be used to assess patients in a face-to-face setting to stratify risk of severe illness or death. In 2021, Acorns internal data showed that three children were screened for sepsis using these tools when they displayed signs of acute deterioration and were promptly sent by ambulance to a local emergency department (ED) for treatment of sepsis symptoms. All three children were subsequently discharged. The children’s palliative care sepsis screening tools are endorsed by the UK Sepsis Trust and will continue to make a difference to patient care.

An email was sent to local children’s hospices and other organisations involved in the partnership working to share what had been developed and to make them aware of the sepsis screening tools available for use. Regular feedback was collected through a digital survey, which was sent to the individual Acorns healthcare professional who cared for an acutely unwell child during an emergency, to understand and evaluate how useful the tools were in practice. The survey questions focused on qualitative feedback, tool design and ease of using the tool. Over six months, four Acorns healthcare professionals completed the digital survey after caring for an acutely unwell child who required screening for sepsis. The local children’s hospices and other organisations involved in the partnership working were also sent the digital survey. When the feedback was collated, it was used to review the sepsis screening tools and no changes were required.

Feedback was also elicited from all the healthcare professionals involved in caring for or transferring a child from the hospice to the ED, again through a digital survey. This included a nurse, and representatives from the ambulance service and the local acute care trust. From the digital survey the following feedback was collated:

  • ‘Tools were supportive in prompting decision-making when caring for the acutely unwell child in the community setting.’ (nurse)

  • ‘Communication via phone to emergency services was more concise and precise regarding priority of ambulance attendance requirement.’ (ambulance service)

  • ‘By the tools being completed in the community, this ensured the ED was pre-alerted to the child’s specific needs for treatment by the ambulance services and that a paediatric team was ready to provide care immediately on arrival.’ (local acute care trust)

When a documentation audit was completed six months after initial launch of the sepsis screening tools, results identified that further training was required, particularly in relation to the appropriate completion of the tools. This training was implemented to ensure the tools were used effectively to manage the acutely unwell child.

Phase 2 – development of paediatric palliative care observation chart

The second phase of the project involved the development of a paediatric palliative care observation chart to accompany the early warning sepsis screening tools. This required support from specialised children’s nurses, and to this end the author liaised with nurses at the Birmingham Women’s and Children’s Hospital NHS Foundation Trust. There were important initial conversations between the author and the lead nurse for patient safety at the trust about the most effective way to implement observation tools in the hospice setting, particularly because there were so many different versions available.

There was also discussion about patient safety and how to ensure that the observation charts were user-friendly through layout and colour indicators. It became apparent through these discussions that there were limitations in the use of NICE (2016) guideline criteria and the Traffic Light System for Identifying Risk of Serious Illness in Under 5s (NICE 2019a) to reflect vital sign parameters indicated on the sepsis screening tools. Therefore, it would not be possible to use the acute care setting tools already in practice such as the Paediatric Early Warning System (PEWS)/National Early Warning Score 2 (Royal College of Physicians 2017) with the sepsis screening tools already completed. This was due to the differing parameters between NICE guidance and the acute care vital sign parameters and the inability to use the numerical scoring escalation system in the community.

To ensure consistency with the community approach, the observational values of the children’s palliative care sepsis screening tools reflected the vital sign parameters. This led to the development of the children’s palliative care observation charts for the following age ranges: 0-1 years, 1-5 years, 5-12 years and 12+ years. The observation charts are available to download free from: www.acorns.org.uk/our-care/professionals/care-education

Figure 2 shows the chart for children aged 1-5 years and is available to view here (rcni.com/sepsis-screening).

The children’s palliative care observation charts were based on the design presented in the second edition of the PEWS manual (Fitzsimons et al 2017). They follow an ABCDE assessment process down the left-hand side and offer a traffic light colour-coded escalation pathway to support the recognition of children identified as being at low, moderate or high risk of deterioration. They are only to be used if the child shows signs of being unwell or if the healthcare professional or parent is concerned about changes in the child’s condition. The vital sign parameters in the observation charts reflect community guidance from NICE and should support the clinical acumen of healthcare professionals to escalate concerns (NICE 2019a, 2019b). The charts were trialled between November 2020 and March 2021 and have been used in practice internally and externally with local hospice partners since March 2021.

Qualitative feedback was collected on an ongoing basis through a digital survey that was sent to Acorns internal healthcare professionals who cared for an acutely unwell child, identified through incident reporting. External partners were also given the opportunity to provide feedback on their use of the charts in practice through a digital survey link. There has been positive feedback on the support the charts are providing when caring for acutely unwell children in a hospice setting, specifically towards the traffic light escalation pathway, which promotes healthcare professional decision-making about referral for support required from other acute care services and wider multidisciplinary teams.

Phase 3 – development of a bespoke educational programme

The third phase of the project was to develop a bespoke educational programme on the care of the acutely unwell child for all community children’s healthcare professionals caring for children with complex care needs and/or palliative care needs, and the launch of the available assessment tools. The first aim was to ensure safe and informed implementation of the assessment tools in the palliative care setting. The second aim was focused on the delivery of the training, which of necessity had to be creative during the COVID-19 pandemic.

The need to move to training delivery via a facilitated virtual learning classroom initially raised many concerns. Some of the healthcare professionals lacked computer skills, so to simplify attendance the setup enabled the virtual learning classroom (Adobe Connect) to be accessed by anyone via a digital joining link. The programme was facilitated by an educator host (the author) and demonstrated the benefits of blended learning styles (Fleming 2001). For example, the programme provided a near-physical experience for learners through the use of webcams, participation through group work, scenario work, interactive games and other elements including visual, auditory and reading sections. In total, the programme supports four hours of learning in three modules – sepsis, ABCDE assessment and the care of the acutely unwell child – as well as the launch of the assessment tools.

To ensure the course would benefit external children’s palliative care teams, nine local hospices were invited to attend the trial programme between November 2020 and March 2021 as part of a peer review process, as well as the programme receiving a peer review from a local higher education institution (Birmingham City University). Feedback was sought through a digital survey of Acorns internal healthcare professionals (n=56). External partners (n=16) were also given the opportunity to provide feedback through a digital survey link. Feedback was anonymous and positive. It included the following comments:

  • ‘It was a super session with lots of great content, loved how it was put together.’

  • ‘The tech worked really well, very smooth and slick.’

  • ‘The variety of activities and learning was great; the breakout sessions provided a really positive forum for discussions and learning.’

The ongoing education programme was updated with evidence-based practice as required and made available inclusively to all UK community palliative care teams for whom it may provide a supportive education opportunity. At Acorns, internal data indicated that there had been an increase in appropriate referrals to hospital since the launch of the education programme, suggesting that nurses had greater awareness of how to recognise, care for and escalate concerns for the acutely unwell child.

Findings

There is a need for sharing of resources among organisations to ensure evidence-based practice is available to support a child when they are acutely unwell. Many hospices and community palliative care services have small and sometimes isolated education teams. This in itself can cause inequalities in the training and education available to healthcare staff. By making courses and external resources widely available, knowledge is shared and this, in turn, reduces any educational deficits and safeguards the health and well-being of more children.

Since the initial launch in November 2020 of the education programme, 20 external teams have accessed it and have requested copies of the tools to be implemented in practice. At Acorns, the education programme has become part of the required core training for healthcare professionals. The education programme is of considerable value nationally for community children’s palliative care providers. More recently, Together for Short Lives, the national umbrella organisation representing children’s hospices, has promoted this project in the members’ area of its website (www.togetherforshortlives.org.uk) with the aim of informing as many palliative care teams as possible about the training and resources available to them.

Conclusion

The care of the acutely unwell child programme and accompanying assessment tools are likely to have a positive effect for children and their healthcare teams in the future. The tools available are NICE-compliant, reflect other up-to-date guidance and have been reviewed by internal and external stakeholders. External stakeholders delivering care in a hospice setting or through community palliative care services are encouraged to become involved with this education programme and use the tools in their practice area.

References

  1. Care Quality Commission (2020) Sector-Specific Guidance: Hospices for Children and Young People. http://cqc.org.uk/sites/default/files/20200212_Sector_specific_guidance_Hospices_for_children_and_young_people_v1.pdf (Last accessed: 27 October 2022.)
  2. Fitzsimons J, MacDonell R, Nicholson A et al (2017) Paediatric Early Warning System (PEWS): User Manual. Second edition. http://rcpi-live-cdn.s3.amazonaws.com/wp-content/uploads/2017/07/6-PEWS-User-Manual-V2-May2017.pdf (Last accessed: 27 October 2022.)
  3. Fleming N (2001) Teaching and Learning Styles: VARK Strategies. VARK-Learn, Honolulu.
  4. National Institute for Health and Care Excellence (2016) Sepsis: Recognition, Diagnosis and Early Management. NICE guideline No. 51. NICE, London.
  5. National Institute for Health and Care Excellence (2019a) Traffic Light System for Identifying Risk of Serious Illness in Under 5s. http://nice.org.uk/guidance/ng143/resources/support-for-education-and-learning-educational-resource-traffic-light-table-pdf-6960664333 (Last accessed: 27 October 2022.)
  6. National Institute for Health and Care Excellence (2019b) Fever in Under 5s: Assessment and Initial Management. NICE guideline No.143. NICE, London.
  7. Royal College of Paediatrics and Child Health (2020) Spotting the Sick Child - Online Learning. http://rcpch.ac.uk/resources/spotting-sick-child-online-learning (Last accessed: 27 October 2022.)
  8. Royal College of Physicians (2017) National Early Warning Score (NEWS) 2. http://rcplondon.ac.uk/projects/outputs/national-early-warning-score-news-2 (Last accessed: 27 October 2022.)
  9. Skills for Health (2022) The Trusted Benchmark for Statutory and Mandatory Training: Enabling Staff to Move Between Employers Without the Need to Duplicate Training. http://skillsforhealth.org.uk/info-hub/core-skills-training-framework-cstf-and-enabling-staff-movement-in-nhs-trusts-in-england/ (Last accessed: 27 October 2022.)
  10. Together for Short Lives (2018) Chapter 2 – Planning for Palliative Care. In West Midlands Children and Young People’s Palliative Care Toolkit. http://togetherforshortlives.org.uk/resource/west-midlands-toolkit/ (Last accessed: 27 October 2022.)
  11. UK Sepsis Trust (2019) The Sepsis Manual. Fifth edition. http://sepsistrust.org/wp-content/uploads/2020/01/5th-Edition-manual-080120.pdf (Last accessed: 27 October 2022.)
  12. UK Sepsis Trust (2022) About Sepsis: What is Sepsis? http://sepsistrust.org/about/about-sepsis/ (Last accessed: 27 October 2022.)

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